Higher Purpose

 I Want To Share

What helped me through my journey. In the lyme community as a whole, there is a collective feeling of being trapped. Lyme patients, in my opinion, often do not get their health back 100%. I know I was discouraged along the way by fellow lyme patients. Why? To cope? I do not know. Treatment is expensive no matter what route one takes. Some people cannot get better because they cannot afford the stockpile of meds. I remember being told "you may get better, but lyme will always be there causing problems at least a little bit. You cannot get over it."

I hated being told that, I was told that by someone whose opinion I did value. This person is the one who clued me off as to what lyme was, before them I had never heard of lyme disease (what a time in my life to remember!). They taught me a lot, they pushed me in the direction of reading and research. She told me about Cure Unknown by Pamela Weintraub, I *think* that was the first, if not at least one of the first books I ever opened that covered the topic of what is called Lyme Disease. I jumped in and read further, I read more books, I read some books more than once. I became a young adult who was now informed and well developed in their opinion on tick borne illnesses. Somewhere on here I have written specifically on what books I have read and what I thought about them, truth is, if you are not researching on your own to understand how lyme and its treatment works, you could be setting yourself up for failure. Being a nerd saved me, or so I think!

The mentality that I hope I have shared on my blog over the years, I hope, has conveyed positivity and perseverance. Anyone can chose to quit trying and stop searching for the next answer. Anyone can give up their hope. Anyone can lose their faith in God, that everything happens for a reason. 

It takes a stronger person to take on the fighter mentality of I cannot quit. At some point, during the sucking and the suffering and the absolute terror that chronic disease had caused me I realized-I will only ever have one human body. One. I may not can choose what events happen, such as contracting an illness or injury. But I can and should actively make choices, mindful thought-out choices, on how I am going to treat my body. I choose what I put into it. I choose what I put it through. I make choices on what time I wake up and what time I go to sleep. All of these things can make or break a treatment protocol of any kind.

If you want to continuously have pain, continuously have fatigue, just skip out on sleeping. Even if you are an insomniac-get in bed. Turn the lights off. Put on relaxing music or a video to listen to (not watch. no screen!). Weeks/months/years down the road when the neurological burden is reduced, normalized sleep will return. On a sleepless night this whole no tv or light thing is stupid boring. Yes. But training our brains for the correct sleeping pattern is beneficial because one day, our body will listen.

Diet. Everyones favorite four letter word. I followed the 80/20 rule for the most part. Some times I had to be more strict, other times I broke loose. 80% good, healthy, anti-inflammatory foods. 20% less than ideal dietary choices. Remember, results aren't instant. Waiting to feel results could take more than an extended amount of time.

Finally I would like to add-patience. Pray. Hold on tight. Some people get better, some people don't, its just the nature of the beast-but I believe with proper treatment everyone can make progress. 

Its easy to take a pill or few a couple times a day, it's easy because it does not take a significant amount of thought space to plan out taking the pills as compared to planning healthy meals, planning to be in bed, planning to exercise (then come up with what exercise to do). The more thought space something takes, the less time we really want to dedicate to it, as chronic illness patients, sometimes we have no thought space to spend. It is hard and we all fail somewhere along the way. What counts is the process of making a choices on how to react to our failure. Choosing is the operative word here.

Writing

I write to share my experience because it can be hard to find hope in the world. I believe that we live in a fallen world that is only degrading further. I do not believe that a magic pill is going to pop up to cure chronic lyme disease. I would love to be wrong, it could happen. But do not wait on someone else to solve the problem. 

I have drawn much of my hope from other lyme sufferers and I believe that it is my duty to share my experience for those who are still trapped in the dark ball of feeling like death incarnate. Yolanda Hadid is probably one of my favorite Lyme advocates. Her book, Believe Me, is the greatest illustration of what a person with chronic Lyme struggles with. She details that money was not her answer, she had much more financial resources than 99% of people with chronic disease and she still suffered for over a decade. Her mentality is something that, in my opinion, is unmatched by the average person suffering with a disease. She was not the victim, she did not quit, she did not give up. Perseverance kept her going, her children kept her going, she found the things she needed to make her life what she wanted despite severe physical suffering. That is so hard, it doesn't happen overnight, it takes failure and people as a whole tend to fear failure. Keep going and you will never truly fail. 

I believe that one day I will write a book or do something more involved and formal than write a blogger blog, to out reach to those who are trapped in the cycle of chronic disease. I also believe that today, in August of 2020, I am not at that point in my life. I know that I have more goals I want to reach before I can look back and say-not only did I beat Lyme+autoimmune disease but I achieved what Lyme tried to take from me.

Part of what motivates and drives me is knowing that I still have so many goals I want to achieve. Lyme sure did hit a big pause button on what I wanted to do with my life. I was not an athlete of any kind in school, I was one of the smartest until I could no longer think at all, I certainly was no writer. I want to grow my knowledge in psychology and work on being motivational for those who want to give away their hope, I do not think that there can ever be enough motivation. I want to build my body up, I want to feel physically strong, I have never really felt that (and if I ever did, I can't remember that time anymore). 

I feel that these are solid goals to work towards now that I do not chronically suffer from disease. 

I want to share these two videos with you all. I re-watched them this evening for the first time in ages. I was anything but disappointed!

Yolanda Hadid at the Lyme LRA Gala:

Ally Hilfiger -Living the Lyme Life feat. Bella Hadid

Week with the Doctor

Just Completed my Second Week at the Clinic for the Year

I spent the week with the doctor, this is the second trip this year.

It went extremely well, my test results as a whole have stayed consistent and I haven't gotten any worse from the last time I visited the clinic. I have been feeling great, going to the gym 4-5x a week, i've been sleeping well, had decent energy, and for the most part feeling normal. He is happy with the progress I have made since my visit in March, once again he said there is no lyme or pathogen's in my system causing me issues, its just a matter of cleaning up the damage that the lyme has left.

Since this time last year, I have gained around 20lbs, which is a big deal for me. I still need to gain more but it is not something I need to worry too much on. This week the doctor did spend some time focusing on my gut so that in theory I can start eating more sooner rather than later. He is not too discouraged by how much I eat, but he does want my appetite to be more consistent (because some days I couldn't care less if I ate or not).

He did work on my gut, brain, lungs, liver and heart this week and that was it. I am taking probably half of the amount of supplements as to what I normally would be taking-which is fantastic. No parasites either, which was a problem forever. Parasite treatment was the worst too!

I am pretty excited, I won't need to see him again until March next year. If it wasn't for my school schedule limiting when I can and cannot go I probably wouldn't go back to the clinic for a year. My March visit next year will probably be the only visit to the clinic next year, which would be the best yet. This year and last, I visited the clinic two per year. Back when I first started going I went 3x the first year, I think 4x the second because I ended up getting very sick (or it may have been the third year...I would have to look back at my notes). In total I have been going for 5 and a half years, which is daunting to think about. Niether my parents, my doctor, or myself thought it would take this long to get my body back to normal. I still struggle with issues here and there, sometimes I do still feel depressed or defeated, I still just get totally worn out sometimes, and I do have to push myself hard to keep my motivation. But. I am doing well. When I have a bad day, I know it will be short lived. Instead of a bad month its just a bad day. I like being able to live my life without really having to think "oh yea, I have lyme disease"

I have made great progress over the last year, I am feeling much better and feeling more normal. I have to say I have one of the best doctors in the world!

I probably will post less on my blog only because I do not have as much to share, but I am not leaving by any stretch. Years ago when I spent so much time reading lyme blogs I found that some would just end, without any idea as to what happened to the writer. Some others would end when the writer started doing better. I want to continue to catalog and share what happens with my life, because Lyme has been a part of my life for so long it has shaped my future.

Because of Lyme I chose to pursue a career in alternative medicine, I will be applying to grad schools in the next month or two. I plan on becoming a chiropractor, I am also considering pursuing a Masters in psychology so that I could be a counselor in addition. In December of this year, I will finally finish my undergraduate degree in psychology. I am super excited for this!

Years ago, in one of my more emotional posts on what lyme can do to ones mental state, I talked about how I felt like it hurt me more to dream about the future because I was not healthy or capable enough to do the things I needed and wanted. I feel like now, I can dream all I want and my body wont be what holds me back. I know psychologically I will struggle a little bit more than others when it comes to some things, but because I know that and I have had some great resources, I will now be able to cope more so than in the past. Brain fog and forgetfulness still happens, it may even be a "normal" amount-truthfully I don't know. My doctor told me that most likely what will happen is that I will start remembering more from here on out, but the things I have forgotten over the years may or may not come back. SO five years from now I will remember this point forward, but some things from five years ago now I may never get back. Which is ok, because I still am making progress.

I have some other "health" goals I need to push for myself that all of us, chronic or not, need to be working on. I have mentioned before about how much my psychology teachers have pushed us to manage our stress, because that will be the prevention we need to keep away from all sorts of ailments. I need to work some more on my spirituality, I have gotten so bad at reading books of any kind because it is hard for me to sit down and read-especially if it is something I want to read to remember. I need to get back into doing some reading and studying, outside of school.

I pray often but I would not say I have been pushing my relationship with God very much as I should be.

I want to continue being able to share with others with lyme or chronic illness that there is hope, ignore what the doctors or naysayers say and push your own pathway towards healing. I have no idea if I will ever have a lyme flair again, I may not or I may have a lot more ahead. Who knows. But what will count is how I handle it mentally, physically and emotionally.